Endometriosis Awareness Month - Stacey's Story

As part of Endometriosis Awareness Month, we're sharing Stacey's story.

"My name is Stacey. I’m 40 years old.

"My first symptoms of endometriosis were extremely painful periods. I thought this was normal. As time went on, my periods became worse, with stomach pains that radiated down my legs and heavy bleeding. Trying to wee and empty my bowels was horrendous; the pain was so severe I’d have tears running down my face. I couldn’t stand up straight and would sit constantly with a hot water bottle on my stomach and between my legs. This often left bright red burn marks from how hot the bottle had to be to ease the pain.

"I got married in 2015, and my husband and I were ready to start a family. After two and a half years of trying and undergoing scans, I was referred for IVF. My consultant scanned me and found a blood‑filled cyst on my ovary. IVF treatment was paused, and I was referred to gynaecology for a laparoscopy. Eight months later, I had my operation. I was in theatre for nearly four hours due to the extent of the endometriosis; it had attached to all my reproductive organs, my bowel, my appendix, and the wall of my abdomen. I was diagnosed with stage 4 endometriosis.

"After surgery, I recovered well, and the pain was almost gone, so I proceeded with IVF treatment. Unfortunately, my first cycle failed, but in January 2019, I started my second round. After all the years of trying, I finally had my first positive pregnancy test. We were overjoyed, and I gave birth to our daughter, Eve, in November 2019.

"I then went back on the mini pill to help control my periods, but after a few years, my endometriosis symptoms returned. My periods became painful again, and I needed to stay close to a toilet due to the severity of the pain; I couldn’t control my bladder or bowels. I would run to the toilet and sometimes have to stop on the stairs in agony. I’d go as far as to say the pain was worse than childbirth.

"I had to stop exercising because it caused more bleeding and pain, and once again I relied on hot water bottles and painkillers, with pain radiating down my legs. It was debilitating.

"I had my second laparoscopy in November 2024. During this surgery, my bowel had to be separated from my uterus, and endometriosis was removed from my rectovaginal space. I have also now been diagnosed with adenomyosis. I currently have the Mirena coil and am doing well. Unfortunately, if this stops working in the future, my only option will be a hysterectomy.

"I always wanted two children, but due to endometriosis, I have only been able to have one. However, I am incredibly grateful for my daughter, because without surgery and IVF, this would never have been possible."

This Endometriosis Awareness Month, we want you to know:
Severe period pain is not something you have to put up with.

If you feel something isn’t right, please speak to your GP.